Addressing and Managing Pain: Resources for Patients Who Have Pain

The management of chronic pain has proven to be a significant challenge for rare diseases patients and their caregivers/care partners. Fortunately, there are a number of different resources, applications and books than can help patients better manage and address pain. 

Note, all resources listed come from pediatric rheumatologists, medical providers and researchers specializing in pain management. 

Online Resources: 

• Stopchildhoodpain.org – Focused on providing information and resources to educate health professionals and families about the characteristics and treatment of amplified pain syndromes in children and adolescents.
• Childpain.org – A special interest group on pain in childhood (with members from 54 countries) focused on raising awareness about pediatric pain. 
• Megfoundationforpain.org – Focused on empowering families with the skills, strategies and support they need to manage pain and medical anxiety. 
• Painguide.com – An education and self-management resource supporting a patient-centric model of chronic pain and care. 
• Thedysautonomiaproject.org – A nonprofit dedicated to educating healthcare professionals, patients and communities about dysautonomia. 
• Creative Healing for Youth in Pain (CHYP) – Focused on empowering youth living with chronic pain through resources, support groups and strategies for teens with pain and their families. 
  • Facebook Group for CHYP
  • YouTube video about CHYP

Applications For Your Computer or Mobile Device:

Note, all applications are free unless otherwise noted and can be found in your device’s App Store. 

• WebMAP Mobile – A program for teens who have problems with chronic pain like headaches, abdominal pain, or back pain. It is designed to help teens cope with pain and increase their ability to do things that are important to them. The program was created by Dr. Tonya Palermo and her team at the Seattle Children’s Research Institute.
• MindShift –  A free self-help anxiety relief app that helps you reduce worry, stress, and panic by following evidence-based strategies. Using CBT tools, you can challenge negativity, learn more about anxiety, develop more effective ways of thinking, be mindful, and relax.
• Breathe, Think, Do – A resource app for you to share with your child to help teach skills such as problem solving, self-control, planning, and task persistence.
• MyCalmBeat – A Brain Exercise by MyBrainSolutions.com that helps improve your ability to manage stress through slow breathing. 
• Breathe2Relax – A portable stress management tool which provides detailed information on the effects of stress on the body and instructions and practice exercises to help users learn the stress management skill called diaphragmatic breathing.
• Small Talk Pain Scale – A mobile application that provides a library of pictures you can tap that speak out loud. This includes pain descriptions and images from the Wong-Baker Faces Pain Scale, as well as icons representing human anatomy.
• Pain Squad – A multidimensional smartphone-based pain assessment application (app) for children and adolescents with cancer (8 to 18 years of age).
• Achy Penguin – An approachable way for kids to locate, quantify, and feel empowered to do something about their pain.
• My Pain Diary (paid app: $4.99) – An award winning app which makes it easy to track your pain & symptoms and report to your doctor.

Books

• Managing Your Child’s Chronic Pain; Tonya Palermo and Emily Law

Referrals

• Find anxiety disorder specialists here: www.abct.org and www.adaa.org.
• Read more about the variety of options available at WebMD.
• Read more about research on comprehensive approaches to pain here.
• Physical therapy is highly recommended, with techniques including strengthening and stretching. Other options include transcutaneous electrical nerve stimulation (TENS), ultrasound, massage, and myofascial release.
• Talk to your physical therapist about orthotics if body positioning, mechanics or structural issues contribute to pain.
• Aqua-therapy is great for kids who experience pain with land-based physical therapy.
• Occupational therapy might include desensitization techniques and sensory integration techniques.
• Mental health counseling includes cognitive behavioral and dialectical behavior therapy, with counselors specializing in kids with chronic illness and chronic pain.
• Multidisciplinary pediatric chronic pain clinics include the following:
  • Children’s Hospital Colorado Pain Clinic (multidisciplinary, outpatient): 720.777.6700
  • Seattle Children’s Hospital Pain Clinic
  • Children’s Mercy Hospital in Kansas City
  • Children’s Hospital of Philadelphia
  • University of California San Francisco
  • Mayo Clinic
  • The Comfort Ability—Boston Children’s Hospital Program (online and in person) for adolescents and parents to learn skills and strategies for managing chronic pain.
• Pediatric Palliative Care Services – Do not let the word ‘palliative’ frighten you away from these services—it simply means ‘relieving pain without dealing with the cause of the condition.’ Your pediatric rheumatologist or primary care physician can help coordinate these approaches and help you manage your disease.

This resource was adapted from materials developed by Global Genes partner, CureJM.